Discussion about personal pain can become heated and ugly when someone who suffers feels misunderstood, which happens frequently for people who suffer with Lyme.

It is perfectly understandable.

People want to empathize, they want to comfort others in pain by sharing their own experience whether it is even remotely similar, which with Lyme is rare.

A Google search for the “scale of pain” returned almost 15 million results!  Fortunatelty for me I found the reference I was looking for very quickly in Wilipedia and published by “Tipna” -( A Blog dedicated to learning, sharing and caring for others from around the world.”  The folllowing is a close replication of an article written by Jack Harich in July of 2002 entitled, “The Comparative Pain Scale” and is most pertinent for those of us suffering with Lyme disease.

A bit of web research shows there is actually no definitive pain scale in use in the medical industry today. The best I could find was an article on Elder Pain: Assessment of Intensity (this link is now broken). This listed several scales, none of which had uniform, objective descriptions of pain per level. For example, the Verbal Description Scale (VDS) uses these words to describe pain levels:

0 = No pain
1 = Mild pain
2 = Discomforting
3 = Distressing
4 = Intense
5 = Excruciating

Or from the Mayo Clinic the scale goes from 0 - 10:

0-1 No pain
2-3 Mild pain
4-5 Discomforting - moderate pain
6-7 Distressing - severe pain
8-9 Intense - very severe pain
10 Unbearable pain”

But what is mild to one person may be terrible to another. Or if you are feeling tired one day and not the next, pain may feel worse when tired, due to the very subjective nature of the descriptive words. One complaint about this scale is “Patients tend to use the middle words and thus distort the assessment.”

It also seems that many attempts to connect the level of pain to the ability to function socially and professionally is made much more difficult because the patient’s suffering is affected by other symptoms of Lyme disease such as fatigue, swollen joints, and dizziness to name a few; where specialists have yet to satisfactorily untangled the symptoms between normal pain and “neuropathic” pain and even “neuropychiatric” pain.

“What’s the difference?” You may ask, “I’m in excruciating pain and frankly I don’t care where on the scale my pain falls, I just want relief from it all!”  And indeed, many Lyme victims are driven to take their own life as a result of the frustration of relentless, intense pain.

Thus a new pain scale (see below) needs to be developed. Use of it would give pain ratings that would be more reliably compared, both from patient to patient, and from day to day on the same patient. It is objective and repeatable because it compares your pain to a known level of pain or behavioral symptoms. The scale is logarithmic. Note that above level 4 you cannot adapt. Note that your pain level probably varies. The descriptive words describe pain intensity, not type of pain.

The two end of the scale, zero and ten, are the two possible extremes. I first described them, then worked up from zero, and when I got to about four I started working down from ten. Eventually the gap closed, fidgeting was done, and the result is hopefully a smooth logarithmic curve and an easy to use scale.

To use the scale, first determine if your pain is Minor, Moderate, or Severe. Then look at the levels within that group and select the one the comes closest to describing your level of pain.
Comparative Pain Scale

0    No pain. Feeling perfectly normal. Minor - Does not interfere with most activities. Able to adapt to pain psychologically and with medication or devices such as cushions.

1    Very Mild. Very light barely noticable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.

2    Discomforting.  Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. Note that people predictably react differently to this self-test.

3    Tolerable. Very noticable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the     time you don’t notice the pain. You have adapted to it. OR, Moderate, Interferes with many activities. Requires lifestyle changes but patient remains independent. Unable to adapt to pain.

4    Distressing. Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and     cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the similated     pain is initially piercing but becomes dull after that.

5    Very Distressing. Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it     that you normal lifestyle is curtailed. Temporary personality disorders are frequent.

6    Intense. Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social     relationships. Comparable to a bad non-migriane headache combined with several bee stings, or a bad back pain. OR, Severe.  Unable to engage in normal activities. Patient is disabled and unable to function     independently.

7    Very Intense. Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone.     Comparable to an average migraine headache.

8    Utterly Horrible.     Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and     sometimes tried. Comparable to childbirth or a real bad migraine headache.

9    Excruciating and Unbearable. Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn’t work, suicide is frequent since there is no more joy in     life whatsoever. Comparable to throat cancer.

10    Unimaginable and Unspeakable.     Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and     lost consciousness as a result of the pain and not blood loss, have experienced level 10, or those with Lyme disease.

Pain is inherently subjective, however, in medical treatment, the goal is to deal with a patient’s own description of pain and not what is, or is not apparant.

“Since 1973, the multidisciplinary pain clinic has come into its own. Many clinics now offer a variety of therapeutic approaches to effective pain management, including physical therapy, acupuncture, “TENS” (transcutaneous electronic nerve stimulation), hypnosis, behavioral modification, and many evolving therapies based on more sensitive technologies.

The following recommendations are excellent. Richard Sternbach, of the Pain Treatment Center at Scripps Clinic and Research Foundation in La Jolla, offered these 7 steps on how to live despite pain in his pamphlet (How Can I Learn to Live With Pain When It Hurts So Much?, revised in 1983):

1. Accept the fact of your pain.

2. Set specific goals of work, hobbies and social acitivities towards which you will work.

3. Let yourself get angry at your pain if it seems to be getting the best of you.

4. Pace your activities. Get in shape, and keep fit. Learn to relax, and practice it.

5. Time your medications, then taper off them.

6. Have family and friends support only your healthy behavior, not your invalidism.

7. Be open and reasonable with your doctor.”

For those of us with Lyme disease, the list above seems horribly understated.  With suicide listed as a common conclusion to those suffering from the pain caused by Lyme disease, one can only imagine the darkness and despair of our suffering.  But again, even amongst those who suffer from pain in the Lyme community, you have those on one side of the spectrum who can function like a normal person, and on the other side of the spectrum you have a younger, healthier looking Lyme infected victim who is days away from taking his or her life.  The enormous differences in pain can certainly not be measured by our inept eyesight, or even a sophisticated questionaire.

How can those in pain be helped?  I have listed some extremely helpful supplements on www.Lyme DiseaseResource.com under “Relieve Symptoms” (which I am the first to admit is a overly optimistic heading - for some people there is simply NO RELIEF!).  But listed within several of those tabs is a product, GABA,  that I could never live without - even though my medical doctors have done a commendable job of working together, and working “outside of the box”.  I am continuously amazed that so few in the Lyme forums have even heard of GABA, let alone having tried it!

If you are in pain and/or suffer from anxiety, please buy a bottle of this amino-acid inhibitor here.

Please share your story of Lyme pain and how you manage it.

So many blog posts and articles devoted to Lyme disease deal with treatment protocols, personal experience, political debate, medical debate, insurance disputes, and technical discoveries.

What we really want to read about is, “How are we going to be cured?”  “How much will it cost?”, “How long will it take?”

But without the possibilities of answers to such questions, we are intrigued to learn about how others cope, and about every possible aspect of chronic Lyme disease and how if does or could affect us.

However, there is a critical aspect of healing from Lyme that is conspicuously missing.  So much of what is written about Lyme disease and shared on forums and blogs – even some of the most important documents available to the layperson about Lyme fail to mention this vital component of recovery.

Sometimes you may glimpse a short blurb on a private post, or even a long treatise on a blog or website.  Also, there are sometimes references in various books from religious perspectives that potentially “tune the reader out”, to scholarly books that potentially put the reader to sleep.

“What in the world is Jenna blogging about?” you are certainly wondering.

I am blogging about the essential concept of positive thinking in each and every treatment protocol for Lyme disease.  Have you seen it?  Do you read about it?  Can you show me the testing that has been done?

Heather Whitestone, Miss America in 1995, is known for saying, “The most handicapped person in the world is a negative thinker.”

I think you will agree with me that this quote is downright bizarre coming from a glamorous and successful “Miss America” - a position that is won only through rigorous physical fitness, exceptional talent, extreme beauty and fierce intellect – the ferocious competitiveness required discourages even some of the most beautiful women from attempting such an honor.

But honestly, how in the heck would a “Miss America” know anything about negative thinking?

Well, believe it or not, Heather Whitestone, almost died as an infant, and lost all of her hearing as a result of the life threatening fever.

Throughout her childhood, Heather didn’t have to listen to the dark and depressing voices of discouragement that others around her discussed. She also didn’t hear the doctor telling her family that she wouldn’t develop past a third grade level.

And no, she never heard the vulgar language that was thrown at her, and around her through her formative adolescent years. She never heard the voices that predicted the little girl who dreamed of being a ballerina would never be able to speak let alone dance ballet.

A difficult  motto that tortures and/or inspires those of us with Lyme disease is to “embrace our disease as a blessing.”  Presented here, perhaps we can appreciate the irony, and share in the amazing inner strength that Heather found to draw upon.

Heather’s deafness truly was a blessing, but only because she made it so.

At the young age of eleven years old, Heather asked her family to send her to a special school to enable her to catch up academically with other students in her class.

While at the Central Institute for the Deaf in St. Louis, Missouri, Heather learned two grade levels per year!  After three difficult but exciting years there, Heather caught up with her peers, and returned to Alabama to graduate from public high school with a very respectable 3.6 GPA.

Money was tough at home so Heather began competing in beauty pageants to earn the valuable scholarship money that was needed to attend college. Twice, Heather qualified for the Miss Alabama pageant only to come home with second place.  How much more could she take?  She was ready to quit.

Her family and friends stepped in with much needed encouragement to try one more time.  After all, it had taken Heather six years to correctly pronounce her last name, so what was a measly two years?  And so it was that on her third attempt in1994, Heather was selected as Miss Alabama.

Three months later, Heather was whisked away to Atlantic City, New Jersey to compete with 49 other accomplished women for the honor of Miss America.

Heather stayed focused on her own reliance on positive thinking; contemplating what this victory would mean for handicapped people all over the world.

Stunning the audience and the world with a magnificent ballet routine performed to Christian vocalist Sandi Patti’s Via Dolorosa, she was the last to know of her final standing because she couldn’t hear the announcer!

During her year as Miss America, Heather introduced the world to her five-point “STARS” program with the help of her family members and close friends.

Perhaps those of us with Lyme disease should adopt this strategy as part of our own treatment protocol.

“STARS” was aimed at showing others how to achieve “Success Through Action and Realization of your dream”S”.”

The five points the program rested on were:

* a positive attitude;
* a goal;
* a willingness to work hard;
* a realistic look at your problem;
* a support team.

Most of us have at least three out of the five – maybe even four, but if you will allow me to take a huge psychic plunge for a moment, I would say that it is the first point of STARS that hangs us up.

We want to be positive, and some days we actually enjoy moments of positive thinking, but how do we make positive thinking a fundamental part of each day?  How do we make it a part of our healing protocol?

If any reader has some strategies for this, please share them because, as James Allen (and others) taught, “A man is literally what he thinks.”  This is taught in every language.

For those of us with Lyme, we might do even better if we follow the advice of William Feather, “…success seems to be largely a matter of hanging on after others have let go.

Please don’t let go!  And keep thinking those positive thoughts too!

This very special book on Lyme disease, “Lyme Disease Solution” by Dr. Kenneth Singleton, is written by a man who understands this infectious disease on many levels, and offers a unique hope for those who are willing to take responsibility for their own basic lifestyle, and to choose a healthy foundation from which to beat back this intelligent bacteria, Borrelia bergdoferi.

Ranging from the most basic aspects of prevention (in the case of Lyme, an ounce of preventions is most likely worth several tons of cure - not a measly pound!) to more sophisticated diet protocols for strengthening and supporting our struggling immune systems, Dr. Singleton carefully presents a series of treatment therapies based upon the underlying health of the affected individuals, the length of infection and the determination (and self-control) of the suffering victims.

Such a “meaty” book could easily disintegrate into hopelessness and/or despair given the lack of sophisticated doctors who understand this vicious and intensely complex bacteria (and could support the treatments recommended in the book), especially due to the fact that Dr. Singleton places the responsibility of finding recovery (or cure) squarely on the patients shoulders.  This shift is clearly necessary from a realistic standpoint (certainly not due to any ideal) to work in conjunction with antibiotics, supplements, diets and/or fitness routines.

The effort to read such a hard-hitting book may prove to be overwhelming for the Lyme patient struggling with Lyme “fog” and extreme mental disorders, however it is an excellent book for the caregivers who are oftentimes left in the dark without any understanding of the issues facing their suffering loved ones.

In addition to thoroughly describing the various antibiotic protocols along with several alternative healing protocols, Dr. Singleton offers a very hopeful protocol addition of “LDN Therapy”, which stands for low dose Naltrexone, a drug initially approved for treatment for drug addictions (esp. narcotics such as heroine, morphine and opium.)  It seems that LDN actively blocks the receptors in the brain that drive the cravings for the narcotics.

As a result of the testing of LDN Therapy for research as a treatment for Lyme, it was found to actually assist in total pain management as well as measurable enhancement of normal immune function.  This opens a potentially new area of research for those who do not respond to other more standardized treatments for pain management and immune system support such as Glutathione, high doses of fatty acids and the generally accepted list of supplements described by Dr. Burrascano in his “Treatment Guidelines for Lyme Disease” which you can download here.

Other notable additions to Dr. Singleton’s book are detailed instructions on detoxification and the critical importance of regular detoxification programs, and also the imperative focus on a healthy diet - not just to refrain from carcinogenic ingredients and/or trans fats and sugars, but very specific diets to support the over-stressed intestines as they process the mass neurotoxins from dying spirochetes and again, to support the immune system.

On a final note, it is certainly worth mentioning the importance of positive thinking and health-related affirmations that Dr. Singleton insists be integrated into every Lyme protocol.

Evidently due to the length of this book Dr. Singleton was not able to further develop the importance of such affirmations or to include any case histories to give credit to these strategies, but this is balanced by the clear conviction of Dr. Singleton’s personal belief in a “power beyond our own” and the necessity of reaching out for supernatural power to overcome this stealthy life threatening disease.

If you have not read this book, you can order it from the link to Amazon below.  It should be on every bookcase of those who have Lyme disease or who genuinely care about those with Lyme disease.

Purchase “The Lyme Disease Solution” here.

The debate goes around and around about whether or not Lyms disease can be contracted through sexual contact.

I for one have a difficult time understanding the question.

Syphilis, the Great Grand-daddy of STD’s (sexually transmitted diseases) is a close cousin to Lyme.  They are both spirochetes, tey both morph into various forms to evade attack by the immune system and/or antibiotics.  They both may remain dormant in their human host for years at a time, and they both gravitate to bodily fluids such as:

* the fluid around the eyes (both diseases can cause blindness);
* to lymphatic fluids;
* to spinal fluids;
* urine
* vaginal fluid;
* semen;
* breast milk;
* fluids in the brain
* fluids in the sinus cavity
* fluids in the bile duct
* fluids in the intestines

Basically, Borrelia burgdorferi can be found in any tissue and in any fluid in the body.

Some may argure that there is not enough time or exposure during sex to transmit the disease.  I am not a conspiracy theorist, nor do I believe that there are any secret government plots toying with biological weapons using ticks (of course I can’t rule that out completely after reading “Lab 257″ by Michael Carroll.) But I will share a story that is verifiable by Dr. Gary Stuer (DVM) who tells of taking a blood test from a dog who had previously tested positively for infectious Lyme disease.

He tells how the dog suddenly shook his head hard, and the needle flew out of his hand into the air and then back down directly into his arm.

He didn’t really think much of it until he started to feel like he was coming down with the flu about 5 days later.  He quickly examined his arm and found to his disbelieving eyes that there was a perfect bulls-eye rash at the site of the needle puncture.

He treated himself aggressively for a full month and began to feel better almost immediately.  Thankfully he has never had another problem.  But stories like that are beginning to blast through the internet…cases of contracting Lyme from mosquito bites and stories of lovers passing on the disease.  My husband was diagnosed with Lyme several months after I was diagnosed.  Was it the shared environment or was it sexual transmission?

I think it takes far more faith to believe it is NOT passed on sexually than that it is.

Bottom line: Protect yourself with prophylactics and make sure your family takes Astragalus which is a powerful herb for protecting the body from ever contracting Lyme. You can find the highest quality Astragalus by Planetary Formulas at Herbs Pro.

SOURCE: http://iai.asm.org/cgi/content/abstract/61/7/3047

The answer according to many medical doctors appears to be, “Yes!”  In fact we have come to a morally dubious time where doctors are registering serious ethical charges against fellow MD practitioners who are helping their patients recover from Lyme disease in spite of great personal risk.

The logical question that begs to be anwered is, “If the patients are recovering, then why are these doctors being legally charged with misconduct and run out of town?”

“Why indeed?”

Parents who have taken their children into ER after infectious tick bites (and the ensuing flu-like symptoms) are enraged when the symptoms return a month later after dutifully administering the three weeks of Doxycyclin.  They are lectured like school children that there is no relationship between the original Lyme and the new symptoms. Desperate to find help for their children, they follow the medical “specialists” as test after test is perfomed, all the while watching the health of their child deteriorate even further. With previous health spiralling into complete disfunction physically, socially and emotionally, loving parents spare no expense as they follow blindly as test after test is ordered to determine the culprit of such emotional and physical torment.

The pathetic response from mainstream doctors rests on the dangers surrounding long-term antibiotic treatment in spite of the fact that adolescence are routinely given 2 or more years of antibiotics for acne.  Is radiation and chemotherapy dangerous?  Yes, of course.  But in spite of such a dangerous treatment, there is NO medical debate about the necessity of desperate measures for such a lethal condition as cancer.

And amongst the victims of chronic Lyme disease, there is no debate at all regarding the dangers of treatment.  In fact, most of us with severe chronic neurological Lyme disease, are willing to do anything, yes, anything to restore our health and vitality.  And for our children?

Months later, after the conventional three weeks of antibiotics, many will watch in horror as the illness progresses in their beloved children to the loss of such basic physical abilities as walking, talking - and some even lose their memory of siblings and even parents.  Yet the conventional doctors insist that the Lyme disease is gone and that the remaining symptoms are “phantom” symptoms.

One doctor who will remain nameless actually told a patient in debilitating pain that any doctor prescribing narcotic pain relievers for Lyme disease should have their license removed!  Where is the compassion?  Where is the medical curiosity to determine why hundreds of thousands of patients are suffering with “phantom” pains - oh yes, and dying from “phantom pains.”

Thankfully many parents connect to the “Lyme Underground”where they are finally given answers to their questions, and frequently rejoice in the complete recovery for their children.  However, the abandoned doctors are filled with righteous indignation and have gone after those courageous Lyme doctors with a vengeance bordering on criminal intent.

The Hypocratic Oath (modern version) bears repeating here:

I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.

I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

***

Those of us suffering from Lyme wonder what has happened to the dedication of medical mainstream with respect to Lyme disease.

The ugly underbelly of this harrowing gauntlet of Lyme disease (or most especially chronic neurological Lyme disease) are illuminated without having to look very hard.

The insurance companies line up behind the IDSA, and the governing board of IDSA has lost all credibility when the Attorney General of Connecticut revealed that nine (9) out of fourteen (14) board members have direct financial benefit from their “power” over Lyme Treatment Guidelines.

Great appreciation and gratitude goes to CT Attorney General Blumenthal who courageously launched an anti-trust investigation into IDSA charging abuse of monopoly power and exclusion of other points of view.  We can only hope that the appointed independent panel will help revise this document in a meaningful way.

Meanwhile, the infuriated parents who are caught between political machinations, and the personal devastation of watching the terrifying decline of their precious child’s health, are being battered financially as insurance companies reject claims that routinely mount in the tens of thousands of dollars.

Additionally, due to the crack-down on “Lyme-Literate” doctors, there are fewer and fewer who are available to treat these sick children.

In spite of the litigious dangers, the patients of these vilified doctors are coming out in huge numbers to donate to legal defense, and to testify to reliably compassionate and effective care.

Instead of honor and celebration for healing the many hundreds of children that just one noted Pediatrician Lyme expert has helped, a vile and despicable law suit has been waged - not by disillusioned patients (or parents of patients), buy by pencil-pushing administrators of the IDSA Guidelines.  Hundreds have come out in support for this treating physician including large amounts of dollars for a legal defense fund.

Certainly there is something very wrong with a medical system that files criminal charges against doctors who are successfully treating these young children (while keeping their fingers pressed hard in the numerous holes in the proverbial dam.)  It is only a matter of time before the wall comes crashing down, and the truth about the stealthy Borrelia spirochete is published far and wide in a desperate effort to find reliable methods for testing and most importantly a cure.

My mother tip-toes across her dark basement room to offer me fresh water to drink, which brings about moaning from my prone body, too weak to sit up and hold the glass, too weak to even change positions, and too weak to drag a pillow over my head to keep the painful light from my burning eyes.

I burst into tears again, the frustration is too massive to contemplate.  My mother wraps her arms around me and cries too.

When will this nightmare end?

He had impressive credentials. As I looked around the office wall of the Kaiser office, I saw a diploma in Public Health from Harvard, the brief bio boasted of a professorship at the Stanford University Medical School. Maybe, just maybe, he would agree with what my LLMD had discerned from my IgenX results-that I had Lyme and Babesia Duncani.

The Doctor extended his hand to me. He was not cold, but congenial. Maybe, just maybe. He was, after all, the top Infectious Disorders Doctor at Kaiser, and he seemed nice enough. Did I have a rash, did my joints ache, did I have a fever? No, no, no. Nightsweats? Yes, sometimes. What else? Persistent insomnia, fatigue, mental “fog”, short-term memory problems, feelings of imbalance. Nothing seems to help very much.

“Well”, he said, “I honestly don’t think it’s Babesia microti”

“Babesia Duncani”, I responded.

“Yes”, he went on, “now what would you like to know?”

“Why does one doctor think there is Babesia based upon a test and another one doesn’t”, I asked.

“Medicine is inexact.”

Well, that sounded very honest, at least.

He continued, “Babesia is rare. However, if you like, we could put you on Doxycycline for a month to see how it goes.  Would you like to try that?”

I declined. He handed me his card as I was waling out the door. I had the clindomycin and quinine (prescribed by my Lyme doctor) at home but hadn’t taken them yet. My visit to Kaiser, armed with the test results and a note from my LLMD, was carried out with the slim hope that the HMO would pay for any future medicines.

No prescriptions or further exams were forthcoming, however, my Kaiser visit did raise doubts in my mind. How am I to know who is right? I don’t have a background in medicine. Perhaps my LLMD is like the proverbial child with a hammer in his hand who sees everything as a nail. Only in his case, everything is Lyme or a co-infection. Lyme is his gig, his bread and butter. After all, alternative reasons could be given for my symptoms. Weren’t the tests prone to error and subjectivity?

Having suffered for years, seen numerous Doctors, Homeopaths, Acupuncturists, even a goddamn Qi Gong master, with no resolution, I am desperate. Desperate, you are prone to try anything, believe anything.

It might be Lyme or it might all be bullshit.

And with that thought, I opened the bottle, took out two capsules of Clindomycin and washed them down with water. God help me and good luck to all!

Back in 1985, Dr. Alan MacDonald stunned the medical world with a special slide show on neo-natal tissue that he had amassed over years of autopsying stillborn babies as the pathologist at South Hampton Hospital. Using a darkfield microscope technique to capture the images on film, Dr. MacDonald presented his shocking hypothesis to the world in Vienna at the Second International Symposium on Lyme Disease and Related Disorders.

Instead of pictures of swollen knees, Dr. MacDonald showed slide after slide of spirochete infected tissue from these babies who were never able to survive outside the womb.

The hostility from the other scientists was at that time more of direct censure than verbal assault, but few doctors could believe what their own eyes were showing them. Lyme disease cannot be contracted in the womb, or passed from the mother in vitro – so the old guard insisted.

His pictures of cyst forms and other bizarre shapes and truncated strings did not look like the clear spiral shape of Borrelia, but when Dr. MacDonald added special chemicals to the tissue, these shapes showed up in the same way that spirochetes do - emitting a soft fluorescent glow.

This convinced Dr. MacDonald that the Lyme spirochetes were behaving exactly like syphilis spirochetes by carefully researching literature from the world’s top experts on syphilis. The queer shapes – hooks, rings balls and truncated strings mixed in with a few clear spirals. This was evidence of the morphic nature of the bacteria, and further proof for his hypothesis.

It wasn’t surprising that Dr. MacDonald the researcher began working with Dr. Burrascano the practicing physician. Together they became more and more convinced that Lyme disease was the mystery infection behind significant illnesses, chief amongst them, Alzheimer’s.

Unfortunately, the hounds were unleashed and a host of doctors were run out of town by medical professionals who followed the tenets of Dr. Steer in Boston, MA. Dr. MacDonald eventually found the adversity too much to bear and moved to Texas where he was haunted by the unanswered questions of his research. Specifically, was Lyme disease causing Alzheimer’s?

Fast-forward to 2006, Dr. MacDonald has returned to New York, this time to St. Catherine of Siena Medical Center in Smithtown, on the Long Island Sound where he immediately revived his research. He began by ordering ten Alzheimer’s brains from a brain bank to slice and study under the darkfield microscope.

What he found, is beyond alarming. To read the full text of his actual reports click here.

He found that seven of the ten brains “…lit up like a Christmas tree.” They were loaded with a genetic Frankenstein – DNA of the spirochetes combined with human chromosomes.

The medical term, “transfection” is not so frightening, but the reality is devastating. It basically means that your own body begins producing the infection. As Dr. MacDonald said, “Once it is in your DNA and you’re churning it out yourself, you’re cooked!”

For the people who are churning it out, it will certainly mean a constant struggle, but for those who are just beginning to get sick, Dr. MacDonald’s work may bring a miracle.

To learn more about Dr. MacDonald click here.

To see Dr. MacDonald’s website click here.

To read Dr. MacDonald’s medical paper on “Transfection” click here.

The major media outlets are coming around to the rising epidemic of chronic Lyme disease thanks to the successful promotion of Under Our Skin.ABC has just given a three page story today called “Mis-Diagnosis: Lyme Disease Dangers” allowing for the possibility of chronic Lyme disease, and the possibility of those who are sick with chronic Lyme disease needing more antibiotics. Read the full story here.

The article is sure to give you a big laugh at one point where one of the staff writer reports, “The Infectious Diseases Society recently agreed to review its governing guidelines for Lyme disease, in an effort to address the long-term medication debate.” There are three reporters, Cindy L. Smith, David Muir, and Emily Yacus.

It is perplexing that one of these professional reporters would not have jumped on the historical move of CT Attorney General Blumenthal last year when he launched an anti-trust investigation into IDSA charging abuse of monopoly power and exclusion of other points of view.

Having been forced to select an objective panel to review the guidelines is very different than IDSA agreeing to revise their guidelines!

Please join me on commenting to the article at the above location.

Those of us with chronic Lyme have been forced to educate ourselves, and find each other for support and encouragement. And we usually find each other through support groups or internet forums, but always based on the terrible pain and various symptoms, even though many never receive a clinical diagnosis of Lyme. Do we feel crazy? It is hard not to when  the conventional medical world call us delusional. Well, they can’t deny the severity of our condition for much longer thanks to two significant events

The first event involves research evidence that has not been publicized, presumably because the “powers that be” are desperate to keep their strangle-hold on research dollars and vaccine deals.

While the IDSA cling to their treatment guidelines and wrestle with the CT Attorney General over conflict of interest, science is marching forward, and Dr. Luft at Stony Brook has discovered evidence that must certainly change the status quo forever.

Dr. Luft found that out of the 20 isolated strains of spirochetes (B burgdorferi ) that his staff meticulously collected from the heart of Lyme territory,
there are six strains that don’t infect humans at all, and ten strains caused nothing more than a rash.

But the amazing fact is that only four of the twenty can leave the skin to infect the entire body. This means that there are six strains of Bb that cause the EM rash but do not cause “Lyme disease”.

The Center for Disease Control (CDC) the federal agency who is responsible for tracking diseases in this country, is so far out of touch with reality that they still report on their website that ”A key component of early diagnosis is recognition of the characteristic Lyme disease rash called erythema migrans. This rash often takes a bull’s-eye appearance and is observed in about 80% of Lyme disease patients.”

So, we are supposed to believe that the CDC has a pulse on this raging epidemic…and they have reported that in 2007 there were 27,444 cases ( or 274,440 if you extrapolate using the CDC’s own disclaimer).

I leave it to the reader to contemplate the true number of people who are infected with Lyme disease. If there are cases of infectious Lyme occurring without a rash, how many thousands of people have been turned away?

One might think that this discovery would lower the numbers, but in reality, it shows that the record keepers are measuring the wrong thing. If you take away the basic requirement for involvement in any of the “sanctioned studies” you lose all of your resulting data.

The CDC says 80% report a rash, International Lyme and Associated Diseases Society ( ILADS) publish that less than 50% report a rash, and Lyme Disease Association (LDA) agrees with ILADS that less than 50% report a rash.

Unfortunately, most Lyme clinicians continue to rely on Dr. Burrascano’s Guidelines which have not been updated since 2005, when evidence of the EM was diagnostic of Lyme (certain infection). So if treatment success is measured using people who may not have had the infectious strain of Lyme, it is no wonder that so many are “cured” with only a few weeks of antibiotics.

The second significant event involves the scientific study released by Viral Genetics recently in their October 18, 2008 press release.

As Viral Genetics was searching for a cure for HIV, they inadvertently found a process to help unlock some of the mystery driving the medical debate about Lyme disease.

In many ways, the research conducted by Viral Genetics should end any lingering question about the validity of chronic Lyme disease. See Post on Viral Genetics.

We should look forward to the day that will surely come, as other scientific teams make use of the technology unveiled by Viral Genetics, that a vaccine and cure will be discovered.

Although the technology is not ready to implement in any meaningful way for those of us suffering today, it does hold a world of promise for the ultimate understanding of why some people develop chronic Lyme and others do not. It also holds a promise for diagnosing Lyme disease by other means than the standard antibody titers, that should be able to target the many, many infections that develop within the body – each unique.

One thing is certain. As understanding of Lyme disease continues to grow beyond the field of IDSA’s tainted leadership, all of the rules are going to change.

This is great new and frightening news.

An accurate diagnostic test for Lyme disease will help sick people receive better treatment sooner, but it is also certain to show that the true number of people infected with Lyme disease has grown so great that the statistics will surely stagger the nation.

The film, “Under Our Skin” continues to get people talking about Lyme disease, and in some cases, taking action. Andy Abrahams Wilson, Producer, Director and Cameraman for the film, has managed to get the film to be presented to members of congress. Already there is talk of public hearings regarding pending legislation.

Another victory toward public awareness of chronic Lyme disease is evident by the number of TV and Radio stations that are giving time to the issue and even playing clips.

The largest audience must certainly be the following news clip from Fox News. Click here. Or if you have trouble with the link, the web address is:

http://www.foxnews.com/video/index.html?playerId=videolandingpage&streamingFormat=FLASH&referralObject=3150614&referralPlaylistId=playlist&maven_referrer=staf

For more information about seeing the film, scheduling a community screening or to see the significant coverage to date go to http://www.underourskin.com/index.html